Bill would aid ill kids, lift care rules

WASHINGTON  Susan Myers of West Hartford had to discuss the unthinkable with her 17-year-old son, Douglas.

Joseph Straw

Published 12:00 am, Thursday, September 18, 2003

The Ewings Sarcoma that appeared in Douglas shoulder two years prior had spread to his brain, and was inoperable. Doctors predicted that he had only months to live.

Should Douglas continue to fight the disease, or should he prepare for death, and seek medication to stem his pain?

Its a decision thousands of families are forced to make. Current insurance laws often prevent patients from receiving curative cancer care  addressing the disease itself  at the same time they receive so-called "palliative" care, hospice-style care focused primarily on addressing pain.

Federal Medicare guidelines also prevent coverage of palliative care unless a patient has a life expectancy of less than six months.

Wednesday, U.S. Sen. Christopher Dodd, D-Conn., co-sponsored legislation that would change the restrictions.

"To tell people you have to make a decision with your child is just wrong," Dodd told the annual conference of the National Childhood Cancer Foundation Wednesday. "Id use other language, but Id get in trouble."

"To put parents in this impossible situation is just unconscionable to me," Dodd said.

Dodd sponsored the Senate bill along with U.S. Sen. Mike DeWine, R-Ohio. Companion legislation was introduced in the House of Representatives by U.S. Rep. John Murtha, D-Pa., and U.S. Rep. Deborah Pryce, R-Ohio.

"This legislation were introducing today is a result of all the work weve done together," Pryce said "Theres so much that remains to be done, but I promise to continue my work if you remain my army."

The bill would also provide up to $40 million annually over five years for education of health care providers about palliative care, and specialized testing of pain drugs for possible use in children.

Dodd pledged passage of the bills.

"Were going to pass this. I promise you that," Dodd said.

DeWine told the surviving children in the audience and the parents of victims: "This is your bill."

Susan Myers, whose son chose palliative care and soon succumbed to his illness, said the bill would aid relief of victims pain and open a window of hope, sparing them introduction to what one parent called "the death nurse."

Myers said that many pediatric cancer victims are forced into thinking that "they know youre dying, so theyve given up on you."